What are the symptoms of Post-treatment Lyme disease syndrome?
Doctors have known for years that they cannot rely on a physical exam to diagnose early Lyme disease unless they find an erythema migrans rash, Bell’s palsy, or heart block. Now, Rebman and colleagues from the Johns Hopkins University School of Medicine acknowledge that doctors also cannot count on a physical exam to diagnose Post-treatment Lyme disease syndrome (PTLDS). [1]
In their article published in the journal Frontiers in Medicine, the authors state, “Results from the physical exam and laboratory testing our sample of patients with PTLDS did not show a pattern of significant objective abnormalities.” However, “the most notable exception was the higher rate of diminished vibratory sensation on physical exam among participants with PTLDS.”
Following treatment for Lyme disease, it is uncommon to find “objective clinical manifestations” in patients with PTLDS, according to the researchers. In fact, “a much more likely scenario after treatment is the persistence or development of subjective symptoms without any residual or new objective manifestation.”
But the authors did discover a collection of symptoms among the Lyme disease patients which, when looked at as a whole, indicated the presence of problems post-treatment. For example, “Although only found in a small subset of our sample (3.4%), two participants met criteria for postural orthostatic tachycardia syndrome, an autonomic condition that has been previously reported following Lyme disease.”
Meanwhile, nearly 32% of the PTLDS patients reported having “severe sleep difficulty,” 5% had “severe visual clarity issues” and 8.3% experienced photophobia.
In fact, researchers identified 19 diverse symptoms which they considered diagnostically and clinically relevant. Out of the 19 symptoms, 9 were especially significant and included fatigue, joint pain, focusing/concentration, muscle pain, memory, finding words, sleep, neck pain, and irritability.
The findings of severe fatigue, pain and cognitive complaints should not be surprising given that at least one of these symptoms was necessary to meet the Infectious Diseases Society of America’s (IDSA) criteria for Post-treatment Lyme disease syndrome. [2]
What is surprising is that no one in the control group had severe fatigue, pain or cognitive complaints. But 50% of PTLDS patients reported severe fatigue, 28.3% reported pain and 23.3% had cognitive complaints.
[bctt tweet=”50% of patients with Post-treatment Lyme disease syndrome have severe fatigue. ” username=”DrDanielCameron”]The remaining symptoms of PTLDS were paresthesias (tingling sensations), low back pain, headache, photophobia, dizziness, visual clarity, chills, coordination, sweats, fasciculations (muscle twitches), breathing difficulties, urination changes, and nausea.
This study supports what many Lyme treating doctors have found in their practices: patients who are treated for Lyme disease can suffer from a range of chronic, persistent and sometimes debilitating symptoms.
Related Articles:
Children in the Netherlands remain ill with Post-treatment Lyme borreliosis syndrome
Doctors say you are cured but you still feel the pain
Fatigue can be overlooked as a “sign” of Lyme disease
References:
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
Jessica
06/17/2020 (1:23 am)
I find myself twitching when still more and constant, persistent lower back pain. No doctors take me seriously when I say it’s related to my Lyme disease. I don’t know what next step to take.
Dr. Daniel Cameron
06/17/2020 (9:34 am)
I find other symptoms are typically present at the same time that help with the diagnosis. You should consider seeing a doctor who is experienced in treating Lyme disease for an assessment. Call my office at 914 666 4665 if you have any questions.
Chris Hendrikse
08/04/2020 (11:02 am)
Dr. Cameron,
After being told by my general doctor and then a neurologist that there’s nothing wrong with me I finally received help from a homeo path who treated me for Bartonella and then the Babesia and Borellia. I had been having G.I. problems and then last June I started noticing a lot of fasciculations in my calves. The day after noticing in the situations I started experiencing extreme fatigue, anxiety(which I never have) and even panic attacks.
After taking supplements in the form of vials and drops, I no longer have Bartonella, Babesia or borrelia showing up as issues anymore, but the fasciculations in my calves and the tightness in my hamstrings continues to be an issue. Is that possibly the result of nerve damage suffered because of chronic Lyme? Is there hope that it’ll eventually go away? Thank you so much for your thoughts.
Dr. Daniel Cameron
08/04/2020 (4:44 pm)
I have had Lyme disease patients with fasciculations without other issues. I am not sure the cause. I have them consult a neurologist to rule out other causes.
Bonnie Carragher
11/08/2020 (11:14 am)
Hi Chris , I have been diagnosed with Lyme , babesia and bartonella. I experience exactly what you are talking about. If I’m having any kind of flare it makes everything worse- energy goes down. Then I get the fasciculations in my calves after I move around each time. It takes a long time to resolve too. Do, I don’t have an answer but sure wish I did. I see Horowitz. Who is your llmd?
Chris Hendrikse
02/19/2022 (1:00 pm)
Bonnie, I was simply going through some different searches and happened upon this thread once again. I see you homeopath. I am done with treatments, And I’ll make appointments on an as needed basis. Usually I just stop in for some supplements. I guess I’ve learned to live with it. I would say my calves have never stopped twitching. Sometimes I can’t really tell unless I look. There are stretches that last up to a week where my legs really bother me and I constantly feel like I have to stretch. I am a little less anxious as every episode to date has gone away and then I feel 95% healthy again. I currently take magnesium, vitamin D3 and some other vitamin supplements. I think anxiety and sugar make it worse. My biggest issue, is where I feel better I start eating things I shouldn’t eat. Any changes for you??
Danie
02/27/2021 (12:39 pm)
Have you found any solution to the lingering muscle twitches?
Christine
06/29/2022 (7:10 am)
Chris,
What did your homeopathic doctor give you? I have tested negative for borrellia but think that I have Bartonella and am going to get tested today.
Dr. Cameron,
My symptoms began with dizziness, severe brain fog, mild headaches and cranial pressure, blurred vision, and trigeminal neuralgia, and now I have daily ice pick headaches throughout my entire head as well as severe nightly (and morning) fasciculations in my feet that have rapidly spread to my calves, making sleep difficult. I also have some twitching in my right hand and paraesthesia that comes and goes in my right calf as well as occasional numb patches in the right calf and foot plus the right wrist. My calves are very tight in the morning and sometimes my entire right leg is tight, yet no amount of stretching helps. For several years, I had severe spastic cramps in my feet at night. My electrolytes are normal. I have 4 small white matter hyperintensities in the frontal and periventricular lobes. I passed my neurological exam and declined the spinal tap. My brain fog and vision issues are better now, but the other symptoms remain, with mild dizziness that comes and goes. My neurologist isn’t sure if it’s MS, and 2 ENTs said that my ears are fine. I’m going to get an EMG soon and see a neuro who specialized in MS, but I am freaking out about the fasciculations and am worried about ALS. I still lift weights (I’m a thin 45-year-old woman), and I don’t think I’ve lost strength. My symptoms began 4 months ago. I have two cats who access the outdoors, and I live in NJ, which has a Lyme disease problem. I’ve been on many oral antibiotics in the past for recurrent UTIs and a breast infection a few years back. I’ve had bladder issues for years, including frequency, retention, and, more recently, a stream that I have to force-start from time to time. I also have HSV1, which began giving me nerve pain in my face when it retreated, starting a couple of years ago. It seemed like the trigeminal neuralgia first occurred concurrently with cold sores and then started happening without it. I also had mono 20+ years ago. Otherwise, I eat organic foods and am a healthy person.
I am desperate and terrified. I’ve just scheduled an appointment with a neurologist who specializes in neurological diseases and Lyme. If you can give me any advice or direction, I will be incredibly grateful.
Christine
Christine
06/29/2022 (7:14 am)
I meant to say that the MAJORITY of these symptoms (fasciculations, brain fog, dizziness, ice pick headaches) began 4 months ago. I am also in perimenopause and having hot flashes.
Michelle
12/08/2022 (12:37 pm)
Hi there, do you know if a good lyme dr in nj? I can’t seem to find any have twitches all over as well
Linda pera
06/13/2020 (2:32 pm)
My 2 year old was exhibiting Covid symptoms . Tested negative and then was tested for Lyme tested negative
Was tested again with more extensive test and tested positive. He has been on antibiotics for a week with a week to go. When he goes outside to play in hot weather he complains of being cold .and wants to come in.
Also his temperament has changed .. I am concerned there might be some cognitive damage .
Dr. Daniel Cameron
06/13/2020 (7:02 pm)
Symptoms of Lyme disease and COVID-19 overlap. I typically recommend followup with your doctor if the symptoms remain.
Sarah Ann Bonneau
05/31/2020 (7:00 pm)
I had a tick in my leg 2 months ago
I had the rash
So they gave me antibiotics
I was not feeling well during the treatment
But as soon as I was done 3 weeks later
I got this horrible neck pain
And pressure pain in my shoulders
My neck is perma-swollen
My hands hurt
I have to wear sunglasses in the light
Or I get horrible headaches
And pain in random spots
Weird burning sensations
And the worst thing is everytime I take a step I have horrible cramps going up my legs
I still havent got any answers on anything
Dr. Daniel Cameron
06/01/2020 (12:48 pm)
I am sorry to hear you are ill. I advise my patients with continued issues to return for a followup. I arrange for other specialists and to determine if additional treatment might be advisable. Call my office at 914 666 4665 if you have questions.
Kayt
04/16/2020 (7:03 pm)
I’m going on my 1st year after 4 years of treatment for Lyme Disease & Babesia, and 1 year of treatment for Bartonella and Rocky Mountain Spotted Fever. Before I got sick, I was pretty average and normal. After getting sick, and even after abx treatment, I have reoccuring panic attacks at random, but also in sync with barometric pressure changes. We discovered my MTHFR gene mutation which complicated things more. I experience tremors randomly, sludgey lymph nodes and swelling, permanent damage has been done to my left eye because I wasn’t diagnosed right away. I developed scoliosis in several parts of my spine spanning top to bottom, both front to back curvatures and side to side curvatures. My muscles are constantly tense and tight where I have to see an acupuncturist on a weekly basis for cupping therapy, acupuncture therapy, and electro therapy. Certain herbal tinctures and teas help alleviate symptoms, but things like my menstraul cycle screw me up big time, I can’t handle basic inflammation anymore. And lastly my G.I track is never going to be the same, after Gallbladder removal and Tick infections right on top of that in the following year, plus another abdominal surgery during my tick infections, I don’t think I’ll ever not feel pain in my adominal cavity again. That’s not to say I’m not better than how I was starting out, I’m 10x better than when I was first infected. I’m just never going to be the old me ever again, or “normal” ever again.
Andrew Brownlee
10/24/2019 (4:04 pm)
Hello my mom has been diagnosed with Lyme a year or two ago and right now she’s having bad muscle spasms and pain in her arm. She says it feels like her arm is being ripped off and she’s screaming and crying. We are confused on why this pain is happening. She hasn’t lifted anything heavy the last week and she sits down and rests and it continues to hurt every couple of hours for at least 30 minutes at a time. What should we do?
Julie Gregg
11/19/2019 (12:37 pm)
Go see Dr Charles Crist, Ashland Mo